Brother update

Things have been looking up over the last couple of days. My brother seems to be improving and they are now reasonably certain it's not the scary SJS I mentioned in my last post. That's a big sigh of relief. He's still in hospital, but they may let him out tomorrow or the next day. The skin thing is still happening. Literally all over him, including inside his nose and ears and such. It has been apparently a very interesting case, as he's had all kinds of people in to look at him. His case has been presented at at least two recent conferences and groups of med students keep coming by to have him presented as well.

I forgot to mention The Doogies. When my brother was first checked in to the ICU, he was assigned to three FOB residents. I swear to god, none of these boys can even grow facial hair yet. They're BABIES! They're all three fresh-faced darlings with fauxhawks and funky glasses and squeaky voices. As precious and young and sweet as they are, I still don't know which one is which, since they travel in a pack. So I've taken to calling them collectively The Doogies. As in, "Have The Doogies been by today?" The nurses all assure me that these are the guys you want working on you, since they're fresh out of school they've got all the latest knowledge and technology and such. I suppose that's true, but still...Doogie Howser to the last man.

As noted by pru, it's time again for the Nekkid French Rugby Team! I think we'll call this today's les petit joies (only not so petit...).

And for today's enuuis petits, how about the woman I work with who asked me a question last week to which the short answer was No, and the long answer was No, but you could appeal to Vice President X for permission but I can't do anything until I get his approval in writing. Both of which I told her and her team multiple times via e-mail and phone last week. She still felt it necessary to schedule a ONE HOUR conference call today to "discuss the issue." So I dutifully called in and she asked me the same question again, to which I gave the long answer and then said that no, seriously, there really ISN'T anything else you or I can do. Total time of the call? 8 minutes, including time spent waiting for everyone to dial in. I suppose the upshot is that I got 52 minutes of my life back. Still. *stabbity*

Brother update

Not a good day. My brother's back in the ICU. I've just returned from there. The crazy skin thing he's been having has gotten worse and finally today I insisted on taking him to the ER. I'm glad I did, because they say he's seriously dehydrated and has an as-yet unidentified infection. Basically, his skin is sloughing off even worse than it was. He's lost so much skin that it's leaving raw spots, splitting, bleeding and oozing. It's really horrible. He says he's not in any pain, but he's freezing. The ICU docs say that's because he's very much like a burn victim right now, and the loss of so many layers of skin make you feel like that. He's laying in bed shivering violently, even under heated blankets. He's also severely dehydrated. Even though he's been drinking water and gatorade like a fiend, losing the top layers of skin causes the moisture in your body to evaporate much faster. I think they said the dehydration can cause the crazy whole-body shivers he's been having, too. Both his arms are swollen now, but they don't seem to be too worried about that. I wonder if maybe it's part of the dehydration. I think it's weird that he's basically been living on Gatorade and Ensure for the last six weeks and yet hasn't lost a single pound. I think any weight he's "lost" has been retained as fluid. I imagine once the edema goes away, he'll find his weight drops.

He's in the ICU because the skin loss means he has little protection against everyday germs and bacteria. Plus, he just finished his first cycle of chemo on Friday, which supresses the immune system. And, with this unnamed infection his white cell count was up over 30,000 (normal is roughly 5k-10k), so they're giving him Vancomycin, their heavy-hitter antibiotic. His heart rate is also up really high, around 128, but he doesn't have a fever. They still don't know if the skin thing caused the infection, but it's most likely. He's got some spots that are pretty nasty. They're fairly certain the Dilantin (anti-seizure med) he was on before is what caused the skin thing.

The biggest thing they're worried about right now is that the skin thing doesn't become something called Stevens-Johnson Syndrome (SJS), which is a potentially life-threatening skin condition that is caused by reactions to certain drugs. I'm just so scared. I've been so worried about him because it's been like 6 weeks since the surgery and after the first week or two, he just hasn't been getting any better. Now we know why, but I wish I had insisted on taking him to the doctor or the ER sooner.

It's also scary because it's very reminiscent of when my mom got sick. She had surgery to remove the tumors but just never really recovered. She never even got well enough to start any chemo or radiation. And now I'm petrified that my brother is going down that same road.

You all have been so helpful and supportive that once again I'm going to ask...Please, please, if you can spare a minute, do whatever it is you can do to help him through this. Please ask anyone who knows me to help. Pray, cross your fingers, send good thoughts, stomp grapes, throw salt, rub a rabbit's foot, anything. We need all the good karma we can get. Thanks. ♥

me me me

Have been very neglectful of my health these last couple of months. I think with everything going on with my brother, I've just let it slip. And man, I didn't realize how much my diet affects how I feel. Especially these last two weeks, I've been feeling significantly run down and unable to focus. I started upping my protein intake yesterday, by adding back the protein shakes I was drinking right after I first had surgery. At 3 months post-op, I quit drinking them because I was allowed to have real food, and I foolishly thought I'd get my recommended minimum 40 grams of protein each day from what I was eating. But I don't really eat that much - even though I eat at 9, 12, 3, 6 and 9, I'm still only eating from 1-3 oz of food. Things like a handful of nuts or a couple slices of deli meat and cheese, etc. I quit logging my food pretty early on (because it's a giant PITA and I assumed I was doing fine) and that was a big mistake.

Plus, I realized yesterday that I was two weeks overdue for my B12 shot, so I hustled off to the doctor to get it, and seriously, within hours I felt completely revitalized. My energy was back and I was able to concentrate on things. I had them call in a prescription for B12 and syringes so I can do it myself each month instead of having to make an appointment (and pay the $20 copay each time!) Dunno what the Rx will cost, but it's worth it. Just making those two changes yesterday have already made me feel a hundred times better. *facepalm*
Note to self: you're no good to anybody if you don't take care of yourself first.

So, ever since the surgery, I've been fiendishly trying to find something to replace my beloved diet Coke. I drink enough water to float a battleship, but sometimes I want something with actual flavor. I think I found my new beverage of choice: V8 Splash Smoothie in Tropical Colada. Yum. It's got soy protein! And tastes good too, without too much sugar. Drinking it feels like vacation!

Speaking of vacation, have I mentioned I'm going to Vegas next weekend? YAY! Mr. F and I are going with some of his family - a few of his mom's English siblings are coming for a visit and we're all going together. Really looking forward to some R&R, pool time and poker.

les petit joies: I am wearing a pair of lounge pants today that I bought, oh, four years ago and have literally never worn because they were too tight and defeated the whole point of being comfy lounge pants. Now, they're too big. The drawstring in the waist is actually functional. *\o/*

Further Note to self: I am NOT starting a companion to les petit joies called ennuis petits (petty annoyances) wherin I bitch about minor things that unreasonably bug the shit out of me, such as the woman I deal with daily via e-mail who signs EVERY SINGLE ONE of her e-mails "Thanks! Have a sunshine day!" Obviously, it's part of her auto-signature, but I think that stupid thing actually removes sunshine from my day.

Old magazines?

So, I've got a BUNCH of back issues of Martha Stewart Living. Like, oh, five or six years worth. Don't ask me why I kept them, but here they are, a practically complete collection. I want to get rid of them but I hate to throw them away.

Any suggestions about what I should do with them? Would my library want them or something?
I have decided to start something new in my journal: "les petit joies" - the little joys. I want to celebrate and remember the small things that make me happy, that make me feel good, that make me smile. Whether it's to do with weight-loss or work or my brother or Mr. Fantastic or whatever, I want to remind myself that life is about the little things. And that I need to take happiness where I can. When I'm feeling down, I want to be able to take these out and find my smile again.

So, les petit joies for today: I've lost enough weight that my wedding ring fits again. \o/ And, today is day 2 of chemo for my brother and so far, he's doing really great - much, much better than we expected. Yay!

Various and sundry

Went to a happy hour on Friday with the girls from the office. Was nice to see them all since I haven't been around the office much lately. Had a drink, had some food - neither out of the ordinary for me. But a couple hours after, I got really sick. In gastric bypass patients such as myself, this is called dumping, and it SUCKS. I have been incredibly lucky thus far, because it's only happened to me one other time since the surgery. I'm guessing it's because I ate a piece of bread as part of my dinner and they say simple sugars/carbs can do that to you. Blecch.

Also, my brother starts chemo tomorrow. He's taking a pill called Temodar, which he takes for 5 days each month for 4-6 months. The medication itself is some scary shit, man. The warnings that come with it! Like not to let the capsules break or get any of the powder on your skin or inhale any dust from it. And, how much it costs! At the pharmacy, I paid $80, I think. But the boxes have price tags on them...~$1,100 for 5 of the 140 mg caps and ~$1,600 for 10 of the 100 mg caps. Holy crap, thank god for health insurance. By the way, anyone out there with any medical background/experience, maybe you can help answer a question. Ever since coming off the oxycontin & percoset, my brother's been having this insane skin reaction.

He's freezing cold all the time, and he's all red and itchy and his skin is SUPER dry. Like, peeling and flaking off, all over his body. It's fifty times worse than the worst sunburn you've ever seen. And it's literally everywhere - all over his body but also his scalp, inside his ears, nose, everywhere. It's like he's molting. I cannot explain the severity. It's actually really disgusting. (maybe exfoliative dermatitis as suggested by emrinalexander?) It got better for a day or two, but today it's back again with a vengence. We've tried everything we can think of to alleviate it. Lotion, loofah, itch cream, itch spray, allergy meds, drinking tons of water, etc. The doctors don't seem to be that concerned, saying it's just a reaction to all the medication he's been on, but he's not getting very much sleep because of it. And he's actually been OFF all meds since Thursday. The last thing he was on was Dilantin (anti-seizure) and the neurosurgeon told him to quit taking it because of the skin business when we saw him on Thursday. So if anyone has any suggestions - for cures, comfort or ideas about what the heck this might be, please let me know.

Oh, another thing that's new, as of today - his left arm is swelling up. It's not painful, and it's just the left arm, but it worries me. Anyone got any ideas about that? His temp was normal when I took it today. (ETA: beaniesheppard suggests it may be lymphedema. And I'm wondering about cellulitis. Anybody know how to treat?) I worry about him so much. And he's hardly eating anything (which is very unsual for him). And jeez, I totally have that food = healing thing happening because I totally feel like if he would just eat, he'd feel better.

I did manage to get him to have some scrambled eggs today. And I bought some Gatorade and Ensure for him when I was at the store the other day, so at least he's getting some basic nutrition. I go into this mother hen mode when I see him. I just want to feed him and take care of him and man, do I wish our mom was around. Anyway, at the chemo class on Sat morning, they told us he would lose his appetite and a lot of caregivers have this same reaction where you just want them to eat and we need to try not to force the issue. So I'll have to be careful about that and make sure I'm not pressuring him too much. Actually, they recommend small meals more frequently, so I told him I'd just have him eat when I eat, since I eat every three hours. Hopefully the chemo treatment won't be as awful as I'm afraid and he'll get over this crazy skin thing and start to get better. *crosses fingers*

Brother update

We saw the oncologist yesterday for the results of his PET scan and got the best news we could’ve. The scan shows there is no other cancer besides the 2mm spot in his lung, and the brain shows clear now as well.

The doctors are still discussing a treatment plan, but most likely he won’t be doing radiation, instead he’ll do chemo. In about six months, regardless of how well the lung spot responds to the chemo, they’ll go in and remove whatever is left of it. We have another appointment on the 31st, so we’ll know more then, but he should be starting the chemo shortly after that.

All in all, this is great news and we’re very relieved.

Brother update

We got to take my brother home from the hospital today! Hooray!

They took the sutures out of his head last night and today we got to bring him home. My dad's staying with him tonight, and prolly for the next few days, even a week.

He's got a walker to make sure he doesn't fall, and about five prescriptions, and he went to bed at 5:30, but he's home. Once he got in bed, he said it was the most comfortable bed in the world. LOL! I'm sure it is, after being in a hospital bed for two weeks. It was funny, the nurses called him "cranie" because that's what they call everyone who's had a craniotomy.

Anyway, still have a long way to go, but he's doing wonderfully after the surgery.

State of the Me

Time for another State of the Me.

My brother is doing really well. They moved him out of the ICU today and into a regular room. They took the bandages off his head also, and his incision is a three-sided square that starts at his right temple, goes up and across, over his ear, and then back down on the back side of his ear. Big nasty stitches but it actually looks pretty good. In fact, he looks remarkably good, considering he had brain surgery a week ago.

They've started physical therapy, getting him up and walking and working with his hands - for some reason, both his hands are really swollen and hard to use. That's more a product of all the IVs and fluids they've been pumping into him than anything to do with brain function. They said he could go home as soon as they feel he's mobile and independent enough, which could be as early as Friday.

We saw the oncologist today, who was very optimistic and made both me and my dad feel really hopeful that we're not going to lose my brother to this. As they told us before, they'll do radiation and probably chemo. But first they have to do a PET scan, which will help them see if there are any other "hot spots" of cancer cells anywhere else. They're pretty certain this was all caused by an untreated lesion on his forearm but can't say for sure. My brother took the news well - they told him the lab results yesterday. I feel like such a coward for not telling him myself when he asked, even though that's what the docs and social worker told me to do.

So, we're not out of the woods yet, but I am feeling much, much better about the situation than I was a week ago. Tomorrow is my grandmother's funeral, and I will be glad to be done with that. My other brother visited the hospital on Monday and I'm glad he's finally done that. I remember when my mom was sick, he hardly ever visited. I think he's just really uncomfortable in hospitals. I know it meant a lot to our brother for him to visit.

My brother's best friend flew in from Long Beach. He got in Sunday morning and left Monday night. He's getting married this weekend and my brother was supposed to be the best man. I feel bad that he has to miss it. I'm glad his friend came out because I think it really cheered my brother up.

I went and got a manicure with my cousin H3 on Saturday afternoon, and then we had dinner & drinks with my cousin H1 and her family. It was a nice break and I really appreciated them making me get out of the hospital and not think about it for a while. I was also able to get to my doctor yesterday afternoon and she prescribed me some Xanax for when things start to feel overwhelming. She also gave me an Ambien prescription to help me sleep, but it has to be pre-authorized by my insurance, so I didn't pick it up because it would've cost over $100 without my insurance. I'll try Tylenol PM and see if that helps.

In other news, today is Mr. Fantastic's and my anniversary. Eight years. It kind of snuck up on us, what with everything going on, so we didn't really do anything special to celebrate. Mr. F did get me a card and a bouquet of flowers and we're going to try and do something in the next week or two like get a couples massage or something.

Brother update

Quick update on my brother. They extubated him today. YAY! So glad they got that tube out...he was miserable with it. He was awake for a lot of yesterday and just hated being on the machine.

Of course, despite the fact that I asked them to call me before they did it, I got there only to discover they had already done it. Grr. But my brother didn't seem to mind, and we talked, he's already getting his voice back. He says he's feeling pretty good, considering.

And one of the first things he asked me was if it was cancer...I thought he should hear it from a doctor and not me so I told him we weren't sure and were waiting to hear from the doctors. I guess that's kind of chicken of me, but I don't have any answers for him and at least if the doctor tells him, he'll be able to ask questions. But both the surgeon and the critical care doc are gone until Monday.

I told Mitch the Cute Social Worker that my brother had asked. Mitch spoke with the intern and then came in and told my brother that the surgeon would be in on Monday to tell him the results. After Mitch left, my brother looked at me and said, "Well, that doesn't sound good..." So I'm sure he's got an idea but I hope he doesn't worry about it all weekend. But I know I would.

I am really angry with my father right now. Yesterday he was supposed to be off taking care of arrangements for my Grandmother, but he didn't. He went home and got drunk and was completely useless. So today he's trying to get arrangements done for my Grandmother and who knows if he'll go by the hospital at all. When I spoke with him today, he asked why I was unhappy with him and I told him and he said, "Well, I had to decompress." And I'm like, that's great, I'm so happy that YOU got to decompress. Meanwhile, I can't sleep or eat and I'm thinking about seeing if my doctor will prescribe me some valium just so I can keep my shit together. And he's off "decompressing."

Brother update

Okay. So, today has not been the best day. They were unsuccessful at getting my brother off the ventilator. He was breathing fine when they turned the machine down but his blood pressure was way up and so they couldn't do it. They're going to try again tomorrow.

And then while I was at the hospital, my aunt Merrilee called the ICU to tell me that my grandmother died this morning. So my dad's going to be out of pocket for the next couple of days while he takes care of the arrangements.

I was alone at the hospital when I talked to my aunt and it all was just too much. I called Mr. F and my cousin H and they came down and my dad got there too, so I had some support pretty quick. And Mitch the social worker guy was there too, before anyone else had gotten there. Still. I...just. I'm so overwhelmed right now. I feel like I can't breathe. I have never felt less capable in my life. God, I wish my mom was here.

The one good thing about today is that while they were trying to get my brother to breathe on his own, they backed off the sedation and it made him quite alert. He was answering questions by shaking or nodding his head and squeezed my hand when I spoke to him.